“Baby, You’re a Firework”

(https://findyouinthesun.com/2017/07/06/baby-youre-a-firework)

 

IMG_1680“I’m taking Mom on picnic.” I said to my husband, Mark, who wiped his eyes and blinked at the clock.

It was six a.m. on the Fourth of July.

“But I need your help,” I pleaded to him, plagued by a duty I couldn’t shirk.

Mark mumbled and rolled over until our fluffy dog whacked his tail around in his crate.

I had stopped escorting my mother out of her care home. On a previous escapade, our antics resembled an Abbott and Costello routine as I revolved Mom’s body into a seated position in the car. Our arms in a tangle, I held her at the waist while lifting her leg into the seat well. Mom stared at me with her watery eyes graying around the edges like the soft hair around her temples then fought back with her typical line of questioning. What car? This car? Why way? This way? Which way is this? 

Now, with my husband, Mark, and our daughter, Shannon, I drove Mom from her care home to a nearby community park. Like a tugboat, Mark and I escorted Mom out of the car and along a cracked asphalt path toward a picnic shelter with a roof drooping along the shady side. We were the only park guests other than a teenager who clutched a bulky picnic basket waiting for a dining companion.

As we approached the lineup of picnic tables, I harkened back to my mother’s Fourth of July cookouts.

When my mother insisted on eating outside no matter the humidity, we groaned. Soon, Aunt Joan arrived with baked beans and my siblings and I groaned again. Mom would grill my father about his barbecuing techniques, which always resulted in an added charcoal flavor to the meats and additional wait time. The kids were excused from a table blanketed in gold-checked cloths and instructed to play until called.

Mom’s meals always populated an extra picnic table with a buffet large enough to feed a team of twelve-year-olds. She topped off the spread with traditional angel food cake, frosted with Cool Whip and dotted with blueberries and strawberries to honor the stars and stripes—and her marriage.

Yes, my parent’s wedding anniversary fell on the Fourth of July. Legend had it, my father’s family shoe store closed during the holiday which made the date perfect for a marriage ceremony. As a youngster, I never recognized the Fourth of July as a special day for my parents. Their anniversary was overshadowed by the country’s birthday, neighborhood bike parades, never-ending softball games, and Italian sausage with fennel seeds cooked to a crisp.

As they aged, my parents celebrated by driving the winding road along Lake Erie to buy an ice cream cone at Toft’s Parlor. My mother loved to park with the car’s nose pointed toward the lake. Though Mom couldn’t swim, she was soothed by the endless waves of blue.

Before we sat down to our meager picnic, Shannon wiped the morning dew off the table with disposable wipes from Mom’s supplies. The air was now scented with baby powder and not fresh-cut grass. We unpacked slices of cucumbers, bags of Bing cherries and chocolate chip cookies, and Mom’s cherished peanut butter and jelly sandwich.

Mom singled out the chocolate-chip cookie first, and by habit, picked at whatever food item I deposited on my plate.

I regaled Shannon and Mark with stories about my hometown’s International Festival and parade where my siblings and I ate pierogies, baklava, and stromboli, all in the course of an hour. One year, my older sister, Laura, was crowned Italian Princess, and soon after, Ms. Congeniality.

Mark chewed through his allotted cookie. “How come you didn’t enter?”

I narrowed my gaze. “Who wants to compete with Miss Congeniality?” Besides, I was as far from a princess as any DC Comic character.

Mom nodded along as she consumed her second cookie and crushed the last cherry in her mouth. Her chin, splotched with cherry stain, dropped near the edge of the table and her elbows slipped off the glossy wood paint.

It was time to go.

We reversed course and returned Mom to her nest.

FullSizeRenderSettling her into an armchair with a tufted cushion in a warm corner in the sunroom, I tried to leave. But tears kept me rooted as if they were essential to watering my family tree.

Mom and I had been conjoined for five years. Five years without Dad. She and I had grown together in the way a married couple grew together except I returned to the outside world and she remained in her inner one.

I could finish Mom’s sentences by tone and not knowledge. If we were seated outside within the vicinity of the bird feeder, and dozens of wings flapped around us, Mom pointed to the birds and her voice rose. “Well, on there is something.” I would confirm there was not one, but three cardinals, and noted the addition of a yellow finch.

Mom relished in the lack of activity and stroked my arm. She embraced the summer days not for the rays but because she could touch skin. She slid her fingers up and down my legs, an act which might appear odd to an outsider. But Mom was only admiring the brown skin of her youth.

In five years’ time, I had loved my parents differently. Mom was alive and her breath lived in me. But there was some inexplicable tie that had nothing to do with mothering or daughtering because neither of us had accomplished much in those roles our last five years together, though we hadn’t lacked in trying.

I disengaged my fingers from the ageless beauty in front of me. But Mom grasped my tan arms as if she could feel the warm kisses the sun once planted on my skin.

I straightened up and cradled Mom’s head as she leaned into my soft tank dress and again wove her fingers through mine. My husband and daughter stood behind me and waited a while. I didn’t care. Mom and I had shuffled along too many corridors together for me to rush our goodbyes.

In a flash, I became a conduit for a presence I could not name. The Fourth of July burst through me and filled the moment with fireworks neither Mom nor I could see. But we felt them.

Yeah, we felt them.

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Still Life

Carolina Marches

My life with Mom was not always about Mom’s life.

The day after Memorial Day, she and I strolled outdoors while she was arguably distraught with the landscapers who had left a mess of mulch spread across the sidewalk while sprucing up the garden beds of Arden Courts.

She simultaneously scowled at the young men, while also brandishing her trademark, I’m so sweet, smile.

Then, her eyes locked in on the benches. She marched straight for one in the sun and sat down.

In a little while, Jack wheeled outside to join us. Jack was younger than Mom, was afflicted with Parkinson’s, but recalled Mom’s name and remembered I was her daughter.

We filled our minutes with talk about what constituted the perfect summer day, and also, how to be on the lookout for sunburn. He told a story about his mother, seated on boat for eight hours, who never once considered she might have needed sunscreen and, only later, screeched at the mere touch of her arm.

The activities director joined us, and produced earphones and iShuffles for both Jack and Mom. The implements were part of the Music and Memory program recently instituted at Arden Courts. Mom’s playlist was crammed full of Sinatra, while Jack’s contained Simon and Garfunkel, and there the age difference was apparent.

After the director departed, Jack realized his iShuffle wasn’t working, so he struck up a conversation with me again. Mom’s headphones had been connected to my iPhone, so I let her mind spin on to the tunes on my player while Jack and I conversed.

I must admit to the difficulty of sitting with someone with Parkinson’s. While Jack stumbled over his words, I wanted to jump in and finish his sentence, despite knowing that was wrong, and also frustrating for him. Numerous times, I held back, held my breath and waited for just the right word to come from his mouth and not mine.

FullSizeRender-102The sun’s intensity that morning had been too much for all to bear. I escorted Mom inside to the join the resident cat, and Jack came along, courtesy of the activities director.

As I tried to part ways with both Mom and Jack, Jack asked if I could stay a few more minutes. He had something he wanted to show me. I was already late and promised to track him down when I returned. In hindsight….there was always hindsight.

Jack had been an avid photographer when he was younger and less afflicted. Of all the reasons he offered for his passion, the last two stanzas of the poem stayed with me. Now, Jack and I were forever linked by art.

 

Still Life

He once shot photographs
of marshes in the Carolinas
– before the shaking
and stuttering –
when his hands were steady
and he could capture a still life
instead of leading one.

We are outside
on a sky blue day
breeze whispering in our ears
and the wheels of his chair
roll backwards
into a bed of irises
where the tires are stuck
in a triangular rut.

He asks, Please, help,
and for an instant
his life is immobile
caught in that moment
between harsh cold concrete
and soft landscape green.

Later, I show him a book,
The Art of Ages,
a photographic journey
in black and white
through the 20th century
of people and how they lived,
sometimes in filth,
sometimes in stealth.

I only photograph still life,
he repeats.

He wants his camera back,
won’t mess with a new, old Polaroid,
and wants his computer too.
Maybe his brother will bring it,
but not his son
who he sees every six months.

He wants to know
if I have photos of my mother
when she was younger,
as Mom’s head bobs into her chest
and she snores away
the perfect silence of a summer day.

Some, I tell him. I have some.

I keep mine altogether.
The words sputter from his mouth
as he pushes off toes
and his chair rolls
backwards in time.

I take photographs,
he stammers,
because I get to keep
the life I lived.

Swipe Left and Right

IMG_0446I swiped left and right between the photos.

No, this was not on Tinder. This was in real life. Mine and hers.

Mood swings were at the top of my most despised moments with Mom. I didn’t hate my mother in that moment. I hated myself because I’ve yet to learn how to adjust to her fluctuations.

But in between those moments, was everything that was life and death.

When Mom was cranky or ornery, my first reaction was always UTI. Bladder infections were common occurrences in individuals experiencing dementia. The infections created moderate to severe changes in disposition. Thus, when Mom’s mood swerved and curved like an Indy race car driver, my first thought was UTI.

True confession. My very first thought is Mom is dehydrated. Then, UTI. And because a UTI left undiagnosed for too long could lead to complications, panic sets in. I track down the nurse, or a caregiver informs me the staff has already told the nurse. Then, we wait on a person whose incontinent. It’s really not an exciting time. One of the caregivers will take Mom to the toilet and turn on the running water, to encourage output, so to speak.

My mother would be horrified if she knew I wrote about and shared those challenges. But, I reasoned, she and Dad could have named any of their children POA. They chose the writer.

Back over Easter, I was leading Mom to the Easter egg hunt when we encountered the Easter Bunny. The bunny stopped long enough to hug Mom, but didn’t speak. Did the Easter bunny ever speak? Mom should have at least recalled that, I presumed. But alas, some memories did not cross the span of time and neurons.

The Easter Bunny’s muteness was NOT acceptable to Mom. Several times she yelled out, “C’mon. C’mon.”

Anyone could read those words on her lips, and in between the lines of her furrowed brow.

Eventually, the Easter Bunny disengaged its fingers from Mom’s, while I slid my fingers into the crusher’s hands. We traipsed down the hallway towards Easter Brunch.

The brunch passed without incident, mainly because I maintained strict oversight in allowing Mom access to the orange juice and extra chocolates. Confined to a corner near the window because of our tardiness and Mom’s desire for light, Mom spent much of her time watching the youngsters anxiously waiting for the hunt to start. One little guy told us all about being in second grade while boasting of towering over my five-foot frame. Mom muddled through with the occasional angry outburst because she couldn’t follow all the conversations.

When a seat opened up in the main room, I guided Mom to an open table where she had a better view of the children processing in and out, and out and in. Then, I grabbed the bunny ears and ladybug antennae and fiddled with each, placing one on Mom’s head (this is where I apologize to Mom), and one on my own head (this is where I apologize to my children).

And Mom lips parted, first in a slight grin, then like the Red Sea, ready to swallow up all the jellybeans and life before her. In the span of a half hour, she was content again.

I lived a thousand lives in between a good moment and a bad. Her voice, when at optimal yelling capacity, reminded me of days she didn’t separate far from her rubber spatula when discipline was needed.

Copy of DSCN1093 - softHer voice, when saying hello to new faces sprinkled with sunshine, rang through to my heart, resounding of ten days spent in Italy, when I took my parents twelve years ago. I had never seen my mother more radiant than in those moments in the square in Siena, mangiare al fresco, called out by a carabaniere, or holding court tableside with a carafe of vino della casa in Fiesole, above Firenze, with her Italian-American daughters at her beck and call.

In celebrating Eastertime with Mom, I experienced the rising and dying and rising again of Mom to beat another infection or crush a daughter’s disposition.

Lately, at Mom’s care home, several residents had died due to falls or the natural cycle. Despite having spent countless hours in this setting, I never knew how often one could contemplate the shaky nature of our existence.

We are all one fall away from the precipice, or one flight away from opening the skies. We are one moment away from sheer joy or complete madness.

I swiped left and right, and prayed we wouldn’t have to do this again until Santa Claus arrived AND that Mom would here to scold him too.

A Long Way to Tipperary

She rested her head on my shoulder like a child in need of a good read. We hummed along to Irish tunes floating through the halls.

It’s a long way, to Tipperary.” “Tipperary,” she sung back.”

I flipped through the pages of a worn Redbook magazine, Mom occasionally reading whatever words were in large print. When I landed in the Food section, a few colorful dinners caught her eye. Tagliatelle with Peas. Sicilian Pasta.

She read each headline, and I read the recipe below it.

“Oh my, that sounds a bit tart for me.” “Too salty.” My comments, not hers.

Instead, Mom took a page between finger and thumb, and tore one page then the next from the binding.

“Its just like we’re at the hair salon, Mom. Ripping apart these magazines.”

She burst into giggles. “Yeah.”

Then Mom handed the tattered sheets to me – was she expecting me to cook dinner? – and sang, “Tipperary.”

And together, we crooned, “But my heart lies there.”

It was a joy-filled exchange after a long day.

I had spent the morning and part of the afternoon at Refresh Your Soul, an Alzheimer’s and dementia care conference sponsored by Episcopal Retirement Services, listening with rapt attention to several inspirational speakers give rise to their own journeys.

I hadn’t planned to visit Mom afterwards. And yet, on those days, surprises emerged. If I arrived with cookies, expecting gratitude, or if I showed up with photos for her to view, my best laid plans, together with Mom and I, completely melted down. But in the rare instances for which I had no plan, were the brightest lights.

The conference had absorbed so much mental space, and offered me many writing prompts, that I preferred to be home. Oftentimes, I struggled with writing about Mom so she will live on in my memory versus sitting with her in the present while she is still alive. I decided on the latter.

After the conference ended, I drove a few miles up the highway to see Mom. As I exited the ramp, I careened around the curve, only to find an abandoned car on the side of the road with a familiar sticker on the bumper. Women Writing for a Change. My car sported one too.

I looked up ahead and spotted two forms walking along the burn. I rolled down my window. “Hey! Angela! What’s going on?” I was full of amazement that I actually knew one of the persons.

“Oh, I ran out of gas.” Angela looked at me like my appearance was the most natural event the world at that moment. Maybe she was a more fervent believer in Fate than I was.

“Well, hop in. I’ll take you and your son to the station.” The station was in view, and was technically only a half-mile away.

She introduced me to her son, and we sped off to the station. Her eighth-grade son and I waited for her to procure a gas can, having typical awkward conversations. Then, I drove she and her son as close to the car as I could come, given the access ramp. I steered back into the flow of traffic, remembering I hadn’t even planned to drive that stretch that day.

Paying attention to the small things, I was where I was supposed to be for the minute, the day, the month.

Back to Mom. I had found her sleeping in a kitchen chair. She always did gravitate to upright chairs. She found some comfort for her aching hips by sitting in proper posture.

She and I had walked for bit, listened to the Merry Moores Duo, and found ourselves navigating a number of magazines. Mom’s eyes grew wide as she perused the meal section of the Redbook periodical. She rarely ate meals that resembled gourmet. Much of her meal was pureed (soft mechanical), which still left some wiggle room for cookies. She’s never challenged in digesting cookies.

After we leafed through the Food section, and discussed our likes and dislikes for each dish, Mom laid her head on my shoulder again, as if she had consumed an entire meal and now prepared for sleep.

In actuality, late afternoon was Mom’s time of day to nap. Valerie, her evening shift caregiver once told me, “If I lay her down a little before dinner, then she gets through dinner, and has a nice comfortable evening.”

Sleep was coming on full-steam. So, I let her fall while my mind drifted back to the conference speaker.

John O’Leary, author of On Fire, posed a few questions to ask ourselves each day, and offered suggestions on how to reframe the answers given back to ourselves.

“Why me?” What about my life had offered the opportunity to care for Mom? And what blessing could I find in the day when given this opportunity?

John asked the audience to meditate on the question of gratitude while he sat to the play the piano. To understand what an accomplishment that was, one needs to know that John, as a nine-year-old, suffered third-degree burns over 100% of his body. Both his hands had been amputated. But his mother insisted he continue his piano lessons, for five more years.

John played “Memories” in the most hauntingly beautiful, but painstaking fashion. The audience closed their eyes and went quiet.

Participants were next prompted to answer “why me” and write to the gratitude that can be found in the disease of forgetting. What had come into one’s life, as a caregiver, that wouldn’t have come otherwise?

My tablemate generated a list of ten thoughts. Another young tablemate drew a blank, as tears continued to flow down her cheeks from the piano music. She was more a hearer than a talker or writer, she confessed.

I didn’t hesitate. And not because I was a writer.

I wrote furiously because I had been in the midst of experiencing Mom’s Renaissance, Part Two. Or Part One-Thousand. I had lost count how many of those she had. I turned giddy as she turned more giddy, and I became like Buddha with all sorts of wisdom to offer.

To witness the transformation of my mother from an older person with a disease into a human being. Not her actual transformation, but the one I am experiencing with my own eyes.

Mom fidgeted when she heard a loud noise in the hallway, breaking my trance.

“Mom,” I whispered to wake her up.

“Yes?” she whispered back in a game of telephone.

“I have to leave.”

“Okay, honey.” She took my chin in her hands and kissed me on the lips.

“Oh, you call everyone honey these days.” I shook my head.

“Yes, you’re right,” she confirmed without understanding my context, only hers.

“Ciao, bella,” I said, as last my goodbye, and we threw each other kisses with our hands.

Mom’s last months of 2016 had been hellish. My first months of the year, busy.

But she and I had settled back into our rhythms, though not necessarily as mother-daughter. And not always as caregiver-loved one.

We had simply become me and you.

It was a long way to Tipperary to the sweetest gal I know. And if our time together offered the opportunity to witness her transformation, surely her gift had been to witness mine.

 

 

The Dog Ate Pot (and Other Excuses)

fullsizerender-65Dear Mom,

As you know, Italians ingest a healthy dose of guilt. When I was a baby, you offered me biscotti for my teeth and guilt for my soul.

Now, as you have aged, I justify my actions based on a sense of loyalty – and guilt.

After your rash of infections and hospital rounds, I found myself rather inattentive to your needs. I wanted to write and tell you why.

  1. My dog ate some pot. No, really, he did. Enzo licked at a patch of grass in a little pocket park in the city. Later, his eyes rolled into the back of his head. He spent the night in the Veterinary ER and rebounded the next day.
  1. The dog’s stomach did not rebound. For two weeks, I cooked more meals for the dog than for Mark and me. I kept him on a tight leash or in his crate. I worked less when your grandson, Davis, was born premature.
  1. I visited while you slept and I cleaned your closets. You might answer, “That doesn’t count, because I didn’t get to tell you, ‘No, no, no,’ or crush your hands in a death grip while we walked around the hallways, or just throw cookies at you.” Yes, we shared a beautiful moment where I could just love you while Sinatra crooned on the CD player.
  1. I went to Washington to march. We, as a country, elected a president who likes to tweet about random things not related to his actual job of governing. “Tweel,” you asked once when you heard it on TV. “Tweel,” you asked again. Finally, I spoke into your good ear, corrected the mispronunciation, and moved you off the topic.
  1. I participated in boot camp. No, it’s wasn’t a military maneuver. Actually, I didn’t go away, just participated in online discussions about my manuscript, the one mostly about you. Did you know there’s a boot camp for everything these days? Boot camp opening scenes, boot camp how to ride a bike on city streets, boot camp baby food production, which I could have applied that knowledge for the dog.
  1. I stood up to speak out against sexual violence, and essentially, women’s rights. “But, we did that already,” you might question. Yes, but we should have been doing it every DAMN day until the violence ended, and its still here.
  1. I walked a few neighborhoods because I promised something stupid like, ‘I’m going to walk, then blog about all of Cincinnati’s 52 neighborhoods (www.gettinmycityon.wordpress.com) before the next mayoral and council elections. The math worked out to one neighborhood per week. However, I started four weeks late. And winter. And the dog.
  1. I visited you on a Saturday, though I usually visit on Sundays, and my timing messed with your biorhythms. You slept then too, and didn’t yell at me. The timing messed with my biorhythms too.
  1. I traveled to Florida to see your granddaughter, my niece. She needed connection to our family whether she liked it or not. Plus, she was adorable and her moon face and her, well, bossiness, reminded me of you.
  1. One day, I quit working on my manuscript to grocery shop. After shopping, I returned home. Later, I discovered your supplies of Gatorade and Lorna Dunes in the back of my car. I was horrified. I had wanted to see you that day. However, you, the thought of you, had slipped my mind.

I’ll return to our regularly scheduled programming soon. However, in missing you, I learned guilt was quite the motivator.

But you already knew that.

Love,

Me

If My Mother Was My Boss…

img_8609

The holidays had brought forth what felt like the Twelve Days of Mom.

In that approximate time, Mom experienced two ER runs, one in which I drove her, the other in which I didn’t dare. She was diagnosed with three infections, multiple scab wounds, pain and discomfort from shingles, a disease for which most folks are given chicken pox vaccinations, or don’t live long enough to experience the adult onset of chicken pox. And a week of the runs caused another ER run.

And this was AFTER Mom’s trifecta of seizures, soap swallowing and sun exposure earlier in the year. (See soap blog, part 1 and part 2).

By the end of the year, I was tired. I pondered a change.

Back in my corporate days, New Year’s had signaled job change. Or at least, looking for a new one. The rush of the holidays always led to a significant energy drain. Like any good employee, I directly attributed the drain to my job or boss, but never myself.

As 2017 approached, I had found myself in the same mode. Tired. The kind of tiredness that comes from knowing what comes next in my mother’s moment, and also, not knowing.

At month’s end, when I spoke to her house doctor, he flipped through her bulging chart. After five minutes or so, he looked up at me. “She’s one tough lady and you have one tough boss.”

Yes, in what job could I be employed by a boss who forgot all the good years I had put in, for the sake of one awful moment in which I accidentally bumped Mom while trying to hold down her arm so the nurse could get the blood pressure cuff around her triceps long enough for Mom to yell, “Oh, no, oh wait a minute, wait a minute, wait a minute?”

In what job could I work for a boss who voices a long stretch of No’s when she doesn’t like something? Remember what Ralphie said about his dad in A Christmas Story? “In the heat of battle my father wove a tapestry of obscenities that as far as we know is still hanging in space over Lake Michigan.” If Mom were still in northern Ohio, she would have blanketed all five Great Lakes with her words.

Where else could I find work where I will never get a promotion? In fact, I’m not sure I would want a promotion, because that would mean the woman I worked for is no longer in need of me. In essence, downsizing of the most tragic kind.

Where else could I be chastised by the boss for what I was wearing, as if there was a dress code for visitors at the care home? “What the hell are those things on your feet?” “Umm, boots?”

In what job could I endure my boss’s harassment for which there is no name? Its not ageist, nor sexist. The closest approximation I can come is reverse genetic harassment, in that my boss only harasses those to whom she gave birth to and is directly related.

Where else could I work where there is no strategic planning by the boss? When I plan to visit for the Christmas show, my boss takes a snooze. When I hope to bring the boss home, my boss bawls loudly and sometimes growls.

Where else could I sit at a job, thinking about all the other things I could be doing while my boss is fast asleep, but holding me in place by the death grip? If she couldn’t leave, neither could I.

In the end, the calendar turned over. My tiredness waned.

Lucky for Mom – and me – she was not my boss. But if the years with Mom taught me anything, my most important job was to sit in her quiet space and make room to meet her where she was, ER or not, furniture mover and all, and hope to one day receive a raise in hugs.

The Land the Mind Forgot

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It was quiet. The women had been lulled to sleep by the usual bustling sounds of caregivers cleaning up after breakfast and nurses dispensing meds. The TV had been turned to one of those channels that shows the classics, like I Love Lucy, Mary Tyler and Moore, and of course, The Andy Griffith Show.  I entered the room, said a few good mornings, and one by one, the women in my mother’s corridor began to wake to start their day once more.

 

The Land the Mind Forgot

Evelyn extends her hands
again and again and again
wanting to clasp anything,
reach towards
anything to buoy her
while she paddles in the air
around the island where she lives.

Just then, a flicker from a time past –
of Mayberry and fishing poles
and Aunt B running for office
against a male-backed Howard
clearly not up for the job.

One might contemplate
the parallels of the day
but these women do not.
They are no longer of the mind
to consider such trite matters.
Theirs is a land
the rest of us, on another horizon,
can neither see
nor taste, nor feel.

Instead, a tune drifts
through the haze
bounces on the sunbeams.
That tune.
The Fishin’ Hole.

Someone, a live someone,
whistles
and suddenly there is joy
as if the women were not watching
the TV and its colored flickers
that strikes lightening upon their faces.
It is not the TV,
but the jolt of nearby whistling
that pierces
the armored proteins
of their minds.

A yellow sock, tapping to a toot.
Fingers, sometimes used as forks,
drum on a lap.
A mouth, that barely opens to speak,
whose lips form a round “o”.

And a sweet someone’s mother
who reaches for another’s hand,
holds it
to cheeks smelling like
the slick formula of Oil of Olay
no longer sold on shelves.

 

10/11/2016

AJW

Do Caregivers Experience Sympathy Pains?

IMG_7456Couvade syndrome. Sympathy Pains. It’s not just for pregnancy anymore.

My mother recently was hospitalized for a soap-swallowing incident. Ironically, as I observed and helped her to recover normal swallowing functions, I began to experience swallowing challenges of my own.

When she has had what I perceive to be, but she cannot share, hip pain on her right side, suddenly, I throw the right side of my back out, reaching in for a load of laundry.

When she aches. I do. When she smiles. I do.

Our pain is so intrinsically connected, that where her pain starts and ends, I cannot detect.

Couvade syndrome, also called sympathetic pregnancy, is a proposed condition in which a partner experiences some of the same symptoms and behavior of an expectant mother. These most often include minor weight gain, altered hormone levels, morning nausea, and disturbed sleep patterns. In more extreme cases, symptoms can include labor pains, postpartum depression, and nosebleeds. The labor pain symptom is commonly known as sympathy pain.
Couvade syndrome is not recognized as a real syndrome by many medical professionals. Its source is a matter of debate. Some believe it to be a psychosomatic condition, while others believe it may have biological causes relating to hormone changes.

I am convinced the same sympathy pains present in pregnancy, of which there is no medical evidence, are transmutable to those who are caregivers, those who are in a constant state of worry, obsession and love.

As such, I find myself wondering how connected am I to her brain health? What is the state of my own? Will I experience the same sort of memory loss that so devastates me at times? What would I want to tell my children, my husband, who ever is left holding the bag full of tricks to make me tick?

A cousin of mine, Debbie Wick Herd, recently posted a quote related to a similar theme of If I get dementia.  The prompt floated around in my head for days as I considered what would really be important for my loved ones to remember.

I wanted to write how I have coerced my husband to sign an agreement that he would pluck my white chin hairs and for my kids to make certain that I was served bacon at each meal.

But I went with authenticity instead of the truth.

 

If I Get Dementia

I want you to steady a pen
in my hands that ache to be of use,
roll out the paper in front of me
or flip on a computer
if I am still adept
at that
which I think I will be –
but may forget.

I want to still write
to feel the pulse of waiting
endlessly for the muse to strike
heartbeat bursting through my chest.
For her to paint a picture
– with words
which rush to ink the thin wood
– with words as broader strokes
this time, because though the mind
has shut down
the heart has opened to a
wider landscape
than I might have guessed.

I want you to edit my words,
craft them as you would sculpt
a bust of my being.
You will know what they mean.
Readers have always known better
than writers
what their words really
say.

Do not fret for an agent
or whether or not to publish.
The words will find their way
in the world.
They always have.
They are like worms digging through
the refuse of human tragedy
or wiggling to the top
of human triumph.

If I get dementia,
read me stories.
You will find my most treasured tomes
tattered and scattered throughout
my life.
Then read me something fresh.
Not news, but a crisp voice,
with a new throated call
to keep the niggles at bay.

And last, read me my own words
so I may recognize them still
and say goodbye
to some of the world
I am leaving behind.

 

Annette Januzzi Wick

Writing as Daughters, Healing as Writers

Pauletta Hansel and I sat as facilitators, at the front of the conference room in the Cincinnati’s offices of the Alzheimer’s Association, facing participants for a workshop titled, Writing Our Lives as Caregivers. Both of us were grown daughters of mothers experiencing dementia.

But Pauletta and I had first known each other from a different life. One grounded in writing. I was new to writing then. And new to an organization called Women Writing for (a) Change. I was also new to grief. And single motherhood. And the arts, as my previous training had originated from a technical background and multiple cancer floors.

But I needed something to sink my teeth (or pen into) and found how much I not only relished the writing process, but speaking and sharing with others about writing brought about healing for myself.

It was by some surprise then, that I found myself nominated for the board at WWfaC, with Pauletta at the helm. I was even more surprised that she nominated me as an “energetic volunteer of the arts”, profiled in the newspaper. I felt rewarded, not necessarily for something I did, but for something I felt.

Years later, she and I were grounded by our mothers. But we were still writers. In fact, Pauletta as the Poet Laureate of Cincinnati. And I, a blogger on the topic of dementia, with a few smaller publishing feats under my belt.

In recent years, our individual work had evolved. The work was from us, but not always about us. However, as we began plotting out our circle, Pauletta had suggested we use our own writing as prompts to move participants towards their inside words. I was surprised. I had never used any of my work as a model for others to emulate. But I knew, as a writer, we must know when to show the way.

What was the best way to demonstrate writing about loved ones with dementia, instead of telling them? Yes, showing them.

Thus two of our poems acted as the impetus for many, many words in that workshop. Ironically, my best writing that summer day originated from one of Pauletta’s poems.

In the best of Mom’s moments now, she smiles. A broad, I know you because I have loved you, smile. It is that smile I always carry with me, for those “other” days, of which there are plenty.

I don’t recall her smile so much when I was younger. In the grainy photographs of Mom, images have melted back into the ink. A regular utterance on any family vacation was, “Ette, do you have the camera?” Or “Ette, did you get a picture of that?”

While she demanded my father carry the camera, change the film, and snap the picture, she never wanted to be the subject of his frame. She would duck away from the lens or out of sight.

If she became the subject, her smile often appeared forced, painted on like lipstick. Those were my memories of her in black and white, and Polaroids.

IMG_7217Ironic now, a shift in media has brought more vivid colors, more clarity as I capture her. In tandem, she smiles more. She has let go of a certain consciousness about her appearance – her hair, her nails, her style of dress. Mom’s smile now comes from a place deep within. When she first sees me, she lights up, even if in the next moment, she begins to yell again.

I experience my mother as joyful (not happy, that emotion seems fleeting). Her pudginess gives way to the youthfulness of a four- or five-year-old. This is how and when I remember to love.

As we closed the writing circle that day, more tears had been put to paper and more joy had replaced the tears. The workshop also brought a demand for more workshops like it.

In the interim, each participant was asked to contribute two lines to a group poem. Gifted with an ability to see patterns in others’ words, Pauletta crafted this touching group poem.

For As Long As We Can: Writing our Lives as Caregivers

There is much more hurting than healing
in our lives right now.
An incredible sadness.
Robbed of all this time,
many years, with my mother.
I let go of the colorful gal I once knew;
now her words cut through me like a machete,
leave a hemorrhage like no other.
All this before I even sit down.

I want so desperately to believe
God has a miracle for my dad,
for my beautiful Gina, in beautiful Bermuda—
how I would love to take her again,
away from the tiny world she knows
—and the bitterness of that impossibility.

I hold to every word, to every syllable,
to every streak of black
remaining in Mom’s soft white hair.
I know I am still her baby girl.
I cling to my old memories.
I don’t want it to change, but it does.

But then, a conversation—mother and daughter.
Mom hunched her shoulders
and walked in a silly way, making me laugh.
She doesn’t need that jacket on,
but she’ll wear it anyway,
singing “76 Trombones” and I join in.
It takes her a moment to connect
my place in her room
with my place in her life.
I know she is in there.
She looked in my eyes; I let her love me.
Mom was back,
but not for long.

The touch of your hand—unnerving,
unbounded by time.
At Mirror Lake in Eden Park
the air had cleared,
the colors of sunset filled the western sky.
Tiny blue gills swirled alone in lazy Van Gogh circles.
Heads together, giggling like conspirators
and wishing for more.
I am still comforted by your touch.

Moments—come and gone—
that would not have been
had we not been present.
Engulfing moments unborn, unknown by us.
A salve to put on the wounds part—
the baggage of the day
and my beat-up body,
the parts that broke,
under the pressure of loneliness.
I breathe deep until the next time;
I sink into the car
and think about doing it again tomorrow.

The contrast—the leaving,
the spent memories so different,
so contrary, so final.
Or maybe not final,
maybe this too will change.
I hold her strength, yet I cannot find her.
The joy we had, the hope
and promise of things to come.
I want to believe.
I cling to these prayerful words:
Relax, you are safe.
I will be here for you—not forever,
but for as long as I can.

I have high hopes the Alzheimer’s Association, and other organizations, will continue to sponsor similar programs that use writing as a tool to mend. As a society, we don’t need more pills, just a few more pens and poets who can lead the way through the heart, even if the mind has already let go.

I can’t speak for Pauletta, but in that workshop, we sent the participants off on their day not as spouses, or siblings, or adult children. Not even as caregivers. We sent them off as writers, in hopes they could mine with their words what the mind could not grasp.

Send an email to Annette Januzzi Wick for more information on writing workshops for caregivers, individuals experiencing dementia and other related topics. Information on her upcoming workshop held in September – From Moments to Memories can be found at Women Writing for a Change.

Visit Pauletta Hansel for more information on Cincinnati’s 2016 Poet Laureate.

Writing and Healing as Daughters and Writers

Pauletta Hansel and I sat as facilitators, at the front of the conference room in the Cincinnati’s offices of the Alzheimer’s Association, facing participants for a workshop titled, Writing Our Lives as Caregivers. Both of us were grown daughters of mothers experiencing dementia.

But Pauletta and I had first known each other from a different life. One grounded in writing. I was new to writing then. And new to an organization called Women Writing for (a) Change. I was also new to grief. And single motherhood. And the arts, as my previous training had originated from a technical background and multiple cancer floors.

But I needed something to sink my teeth (or pen into) and found how much I not only relished the writing process, but speaking and sharing with others about writing brought about healing for myself.

It was by some surprise then, that I found myself nominated for the board at WWfaC, with Pauletta at the helm. I was even more surprised that she nominated me as an “energetic volunteer of the arts”, profiled in the newspaper. I felt rewarded, not necessarily for something I did, but for something I felt.

Years later, she and I were grounded by our mothers. But we were still writers. In fact, Pauletta as the Poet Laureate of Cincinnati. And I, a blogger on the topic of dementia, with a few smaller publishing feats under my belt.

In recent years, our individual work had evolved. The work was from us, but not always about us. However, as we began plotting out our circle, Pauletta had suggested we use our own writing as prompts to move participants towards their inside words. I was surprised. I had never used any of my work as a model for others to emulate. But I knew, as a writer, we must know when to show the way.

What was the best way to demonstrate writing about loved ones with dementia, instead of telling them? Yes, showing them.

Thus two of our poems acted as the impetus for many, many words in that workshop. Ironically, my best writing that summer day originated from one of Pauletta’s poems.

In the best of Mom’s moments now, she smiles. A broad, I know you because I have loved you, smile. It is that smile I always carry with me, for those “other” days, of which there are plenty.

I don’t recall her smile so much when I was younger. In the grainy photographs of Mom, images have melted back into the ink. A regular utterance on any family vacation was, “Ette, do you have the camera?” Or “Ette, did you get a picture of that?”

While she demanded my father carry the camera, change the film, and snap the picture, she never wanted to be the subject of his frame. She would duck away from the lens or out of sight.

If she became the subject, her smile often appeared forced, painted on like lipstick. Those were my memories of her in black and white, and Polaroids.

Ironic now, a shift in media has brought more vivid colors, more clarity as I capture her. In tandem, she smiles more. She has let go of a certain consciousness about her appearance – her hair, her nails, her style of dress. Mom’s smile now comes from a place deep within. When she first sees me, she lights up, even if in the next moment, she begins to yell again.

IMG_7217I experience my mother as joyful (not happy, that emotion seems fleeting). Her pudginess gives way to the youthfulness of a four- or five-year-old. This is how and when I remember to love.

As we closed the writing circle that day, more tears had been put to paper and more joy had replaced the tears. The workshop also brought a demand for more workshops like it.

In the interim, each participant was asked to contribute two lines to a group poem. Gifted with an ability to see patterns in others’ words, Pauletta crafted this touching group poem.

 

For As Long As We Can: Writing our Lives as Caregivers

There is much more hurting than healing
in our lives right now.
An incredible sadness.
Robbed of all this time,
many years, with my mother.
I let go of the colorful gal I once knew;
now her words cut through me like a machete,
leave a hemorrhage like no other.
All this before I even sit down.

I want so desperately to believe
God has a miracle for my dad,
for my beautiful Gina, in beautiful Bermuda—
how I would love to take her again,
away from the tiny world she knows
—and the bitterness of that impossibility.

I hold to every word, to every syllable,
to every streak of black
remaining in Mom’s soft white hair.
I know I am still her baby girl.
I cling to my old memories.
I don’t want it to change, but it does.

But then, a conversation—mother and daughter.
Mom hunched her shoulders
and walked in a silly way, making me laugh.
She doesn’t need that jacket on,
but she’ll wear it anyway,
singing “76 Trombones” and I join in.
It takes her a moment to connect
my place in her room
with my place in her life.
I know she is in there.
She looked in my eyes; I let her love me.
Mom was back,
but not for long.

The touch of your hand—unnerving,
unbounded by time.
At Mirror Lake in Eden Park
the air had cleared,
the colors of sunset filled the western sky.
Tiny blue gills swirled alone in lazy Van Gogh circles.
Heads together, giggling like conspirators
and wishing for more.
I am still comforted by your touch.

Moments—come and gone—
that would not have been
had we not been present.
Engulfing moments unborn, unknown by us.
A salve to put on the wounds part—
the baggage of the day
and my beat-up body,
the parts that broke,
under the pressure of loneliness.
I breathe deep until the next time;
I sink into the car
and think about doing it again tomorrow.

The contrast—the leaving,
the spent memories so different,
so contrary, so final.
Or maybe not final,
maybe this too will change.
I hold her strength, yet I cannot find her.
The joy we had, the hope
and promise of things to come.
I want to believe.
I cling to these prayerful words:
Relax, you are safe.
I will be here for you—not forever,
but for as long as I can.

 

I have high hopes the Alzheimer’s Association, and other organizations, will continue to sponsor similar programs that use writing as a tool to mend. As a society, we don’t need more pills, just a few more pens and poets who can lead the way through the heart, even if the mind has already let go.

I can’t speak for Pauletta, but in that workshop, we sent the participants off on their day not as spouses, or siblings, or adult children. Not even as caregivers. We sent them off as writers, in hopes they could mine with their words what the mind could not grasp.

2016 From Memories to Moments-FINAL-3-page-001Send an email to Annette Januzzi Wick for more information on writing workshops for caregivers, individuals experiencing dementia and other related topics. Information on her upcoming workshop held in September – From Moments to Memories can be found at Women Writing for a Change.

Visit Pauletta Hansel for more information on Cincinnati’s 2016 Poet Laureate.